Working with Someone Living with Lewy Body Dementia

Transcription

1 1 Handouts are intended for personal use only.any copyrighted materials or DVD content from Positive Approach, LLC (Teepa Snow) may be used for personal educational purposes only. This material may not be copied, sold or commercially exploited, and shall be used solely by the requesting individual. Copyright 2017, All Rights Reserved Teepa Snow and Positive Approach to Care Any redistribution or duplication, in whole or in part, is strictly prohibited, without the expressed written consent of Teepa Snow and Positive Approach, LLC 2 Working with Someone Living with Lewy Body Dementia 3 1

2 PET and Aging: PET Scan of 20-Year-Old Brain PET Scan of 80-Year-Old Brain ADEAR, As we age, we do NOT lose function in our brains, UNLESS Something Goes Wrong With Our Brains 5 But, Couldn t It Just Be Forgetfulness or Getting Old? - There is a difference - At first it may be hard to tell - Then you start to notice patterns - One of these things start to show changes: - Memory - Problem solving - Word finding - Behavior 6 2

3 Ten Early Warning Signs for Alzheimers and Some Other Dementias: -Memory loss for recent or new information, repeats self frequently -Difficulty doing familiar but difficult tasks: managing money, medications, driving -Problems with word finding, mis-naming, or misunderstanding -Getting confused about time or place, getting lost while driving, missing several appointments -Worsening judgment: not thinking thing through like before -Difficulty problem-solving or reasoning -Misplacing things, putting them in odd places -Changes in mood or behavior -Changes in typical personality -Loss of initiation, withdraws from normal patterns of activities and interests 7 Cognitive Changes with Aging: - Normal changes: more forgetful and slower to learn - MCI: Mild Cognitive Impairment: Immediate recall, word finding, or complex problem-solving problems - Half these folks will develop dementia in 5 years - Dementia: Chronic thinking problems in > 2 areas - Delirium: Rapid changes in thinking and alertness, seek medical help immediately - Depression: Chronic unless treated, poor quality of life, I dont know or I just can t responses, no pleasure, can look like agitation and confusion 8 9 Normal vs. Not Normal Aging: Normal Aging: Slower to think Slower to do Hesitates more More likely to look before leaping Know the person but not the name Pause to find words Reminded of the past HARDER NOT Normal Aging: Can t think the same Can t do like before Can t get started Can t seem to move on Doesn t think it out at all Can t place the person Words won t come even later Confused about past versus now VERY DIFFERENT 3

4 How Common is Dementia? The risk goes up dramatically with increasing age America is aging Various dementia will increase by 300% over the next 50 years without medical advances and lifestyle changes 10 What Else Could It Be? - Another chronic medical condition developing - Depression or other mental health issue - Delirium: acute/rapid onset - Medication: toxicity, interaction, side effects - Undetected hearing loss or vision loss - Severe but unrecognized pain or central acting pain meds - Other things 11 Drugs That Can Affect Cognition: Anti-arrhythmic agents Antibiotics Antihistamines/ decongestants Tricyclic antidepressants Anti-hypertensives Anti-cholinergic agents Anti-convulsants Anti-emetics Histamine receptor blockers Immunosuppressant agents Muscle relaxants Narcotic analgesics Sedative hypnotics Anti-Parkinsonian agents 12 Washington Manual Geriatrics Subspecialty Consults edited by Kyle C. Moylan (pg 15) published by Lippencott, Wilkins & Williams,

5 Why Bother Getting a Good/Complete Diagnosis? - Future plans - Progression and prognosis -Finances -Health - Being in control - Medications can make a difference in quality of life 13 Dementia: What Changes? - Structural changes: permanent - Cells are shrinking and dying - Chemical changes - variable -Cells are producing and sending less chemicals -Can shine when least expected due to a chemical rush 14 Four Truths About Dementia: - At least 2 parts of the brain are dying - One related to memory and the one other - It is chronic can t be fixed - It is progressive it gets worse - It is terminal it will kill, eventually 15 5

6 Normal Brain Normal Brain Alzheimers Brain Alzheimers Brain 16 Learning and Memory Learning & Center Memory Hippocampus Center Hippocampus BIG BIG CHANGE 17 Understanding Language BIG CHANGE 18 6

7 Hearing Sound Not Changed 19 Sensory Strip Motor Strip White Matter Connections BIG CHANGES Automatic Speech Rhythm Music Expletives PRESERVED Formal Speech and Language Center HUGE CHANGES 20 Executive Control Center: Emotions Behavior Judgment Reasoning 21 7

8 DEMENTIA Alzheimers Disease Young Onset Late Life Onset Vascular Dementias (Multi-infarct) Lewy Body Dementia Diffuse LBD Parkinsonian type Fronto- Temporal Lobe Dementias Other Dementias Genetic syndromes Metabolic pxs ETOH related Drugs/toxin exposure White matter diseases Mass effects Depression(?) or Other Mental conditions Infections BBB cross 22 Dementia does not equal Alzheimers does not equal Memory problems 23 - Can have multiples Mixed Picture: - can start with one and add another - Can have some symptoms and not all - Also can have other lifelong issues and then develop dementia (Down s, Mental illness, personality disturbances, substance abuse) 24 8

9 Positron Emission Tomography (PET) Dementia Progression vs. Normal Brains Normal Early Dementia Late Dementia Child G. Small, UCLA School of Medicine Teepa Snow, Teepa Positive Snow, Approach, Positive Approach, LLC to be LLC reused to only be reused with permission. only with permission. Lewy Body Dementia (LBD) or Dementia with Lewy Bodies 27 9

10 Who Gets LBD? - Genetic component, but not always - Slightly more males than females right now - Possibly slightly more African-American risk than Caucasian risk - Younger onset than Alzheimers: Duration from first symptoms: 7-9 years 28 Current Thinking About LBD: - It may be the 2 nd most common type of dementia - It may occur in 20-50% of all cases - It is missed as a diagnosis in over 50% of cases - It is mis-diagnosed as Parkinsons or Parkinsons plus Alzheimers in most cases - It is commonly found with a second condition: - Alzheimers - Vascular - Parkinsons - Alcohol-related dementia 29 Diagnosis of LBD: LBD is currently given as a probable diagnosis by presence of patterns of clinical symptoms, but according to research: - It can be detected with LP in spinal fluid - It can be detected with PET scans - It can t be seen as well with CT scans or MRI - It does not yet have a genetic test 30 10

11 LBD Can Be Missed If: - The health care provider is not looking for it - The health care provider is mostly familiar with Parkinsons and Alzheimers - The symptoms are not on when the MD sees the person - The person is on certain meds or is on heavy doses of meds for behaviors already 31 Mis-diagnosed or Missed LBD Is Dangerous and Can Be Deadly 32 Why? Drugs are used to try to manage symptoms: -50% of cases of LBD have drug hypersensitivity: -Irreversible changes arecommon 33 11

12 Lewy Body Dementia: - Movement problems, falls - Visual Hallucinations: animals, children, people - Fine motor problems: hands, swallowing - Episodes of rigidity, syncopy - Nightmares or insomnia - Delusional thinking - Fluctuations in abilities - Drug responses can be extreme and strange - Can become toxic, can die, can become unable to move - Can have an OPPOSITE reactions 34 More About Symptoms of LBD: Delusional Thinking: -Fixed beliefs that are false -Frequently involve sexual or abusive beliefs about family or caregivers -Telling confabulated stories about themselves or others -Other thought processes can seem reasonable and accurate 35 More About Symptoms of LBD: Visual Disturbances: - Hallucinations that involve animals, insects, adults, or children - Looking at the edges or things and trying to touch or trace along imaginary lines - Seeing images that are distorted in position and depth perception - Seeing a faint image over the real world - Worse in the afternoon and evening - Difficulty figuring out how to use objects and tools 36 12

13 37 More About Symptoms of LBD: Problems with Sleep: - 50% will have long-term insomnia issues -Many will not be able to sleep for 4-5 days in a row, then will oversleep -Many will cat nap only, mostly in daytime hours -The lack of sleep can worsen mood, behavior, skill -May become motorically agitated when up for long hours: pacing, lapping, or seeking exits More About Symptoms of LBD: Thinking Problems: - Think dreams really happened -Can t get into REM sleep: walking dreams -May be more paranoid: thinking others are out to hurt or get them - Easily angered or upset - Intolerant of others 38 More About Symptoms of LBD: Sensory Changes: - Hypersensitive to touch - Hypersensitive to movement -Hypersensitive to textures, temperatures, tastes - Hypersensitive to sound/noise -Easily overwhelmed by what is going on around them: may seek more private and quiet spaces 39 13

14 Most Concerning LBD Symptom: - 50% of people with LBD are hypersensitive to anti-psychotic medications -Haldol, respirodol, seroquel can be dangerous and/or deadly: damage extrapyramidal system -Movement ability can be damaged and not recovered 40 Movement Issues with LBD: - Syncopal episodes: lasting moments only or hours at a time - Episodes of rigidity: lasting seconds to hours, then spontaneously recovers - Hand posturing: closing up little finger side and thumb pressed against index and middle finger - Highly variable and episodic 41 Latest Thinking about Lewy Body Treatment: - Try AChIs: Start Low and Go Slow - Then try Namenda early: Start Low and Go Slow - Be VERY careful about anti-psychotic meds: not Haldol - Balancing movement losses and aid to function: not working? - Parkinson s meds may/may not help movement BUT may make hallucinations and delusions worse - Anti-depressants may be used to help anxiety, sleep, and depression but can increase confusion, movement drowsing - Sleep aids or anti-anxiety meds can cause paradoxical reactions 42 14

15 Hands-On Skills for LDB: - Slow Down!!! - Simply requests: single steps - Start over fresh if stuck - Try using rhythm and music to help to encourage movement - Make sure the person has clear visual cues and simple verbal info before you touch them - Use firm pressure, not lots of light touch or moving touch 43 More Hands-On Skills for LBD: - Use Hand-under-Hand - In later stages, be aware of visual limitations - Do one thing at a time - Allow more time for transitions - Consider modified diets sooner - Identify fluid preferences and monitor adequacy even early in the condition - Consider guided ambulation rather than a walker during episodes of falls 44 Environmental Supports: - Moderate stimulation -Not too loud or too quiet -Not too crowded or too empty -Not too hot or too cold -Not too busy or too still -Not too boring to too stimulating - Eliminate sharp edges and tight spaces Work to figure out what is just right for that person! 45 15

16 Intervention and Programming For: - Physical activity - Mental activity - Social activity - Spiritual involvement - Well-being and self-worth - Minimizing risky, challenging, or dangerous behaviors - Reducing anxiety or distress 46 Four Key Building Blocks: - Activities to Relax and Re-energize - Activities to Feel Productive and Valued - Activities for Fun and Just Because - Activities to Take Care of Yourself 47 It s All About Balance: - Some of each - Not too much of any - Get into a routine and stick to it - With a little changing up - And time in between to chill - Some old, some new - Some for me, some for you 48 16

17 Family Members and Care Partners: - Take care of yourself - Understand the symptoms and progression - Skills in support and caregiving - Skills in communication and interactions - Understand the condition - Identify and use resources - Set limits for yourself 49 Take Some Time To: Figure out who you are and Who the other person is Understand similarities and differences and Respect both partners needs 50 Things That Will Help: - Build activities - Get active - Socialize - De-stress - Get enough sleep - Get sleep apnea and depression treated - Control blood pressure and diabetes - Take meds carefully 51 17

18 So What is Lewy Body Dementia? - It changes everything over time - It is NOT something the person can control - It is NOT always the same for every person - It is NOT a mental illness - It is real - It is hard at times 52 LBD Cannot Be Cured, But it Can Be Treated: - With knowledge - With skill building - With commitment - With flexibility - With practice - With support - With compassion 53 DISCLAIMER The content contained in this presentation is strictly for informational purposes. Therefore, if you wish to apply concepts or ideas contained from this presentation you are taking full responsibility for your actions. Neither the creators, nor the copyright holder shall in any event be held liable to any party for any direct, indirect, implied, punitive, special, incidental or other consequential damages arising directly or indirectly from any use of this material, which is provided as is, and without warranties. Any links are for information purposes only and are not warranted for content, accuracy or any other implied or explicit purpose. This presentation is copyrighted by Positive Approach to Care and is protected under the US Copyright Act of 1976 and all other applicable international, federal, state and local laws, with ALL rights reserved. No part of this may be copied, or changed in any format, sold, or used in any way other than what is outlined within this under any circumstances without express permission from Positive Approach to Care. Copyright 2017, All Rights Reserved Teepa Snow and Positive Approach to Care 54 18

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